Thanks, yes I am lucky they are willing to work with me. I was scared to talk to them about it. Just worried bc it could have gone the wrong way you know. I didn’t even think about the ADA, I guess I haven’t come to the realization that thats me😕
I guess I’m still trying to come to terms with it…
Thanks for your kind words😊
Hi Andrea,
Everyone will have different packs depending on what works for them. There was a post a while ago about it, I will post the link below. I include pain medication, wrist and knee braces, heat pack and cold pack, and some topical pain relief like Salon-Pas. I also keep a pair of comfortable shoes in my car since they didn’t fit in my bag. Some people put high energy snacks. See the post, I hope that helps.
Hi Andrea,
Thanks for responding. PT’s (I am a retired/disabled PT) are generally tuned in to ADA-oriented stuff. I admit, it is real hard to really come to terms with the fact that you are “sick” with a syndrome or disease like Fibromyalgia. Certainly hard for me. Even now, after having had this “syndrome” for years, it is hard to admit that it is a chronic condition, and that I won’t necessarily get a great deal better after 4 weeks of an exercise class or starting a new med, or whatever.
Like everyone here seems to say though, everyone is different. I do still think I can get better, yet maybe not completely back to “normal” or maybe it will take me longer than it does for people who don’t have fibromyalgia. It’s just weird to have a condition that is “chronic”. Doesn’t conform to the typical norms of improvement after an injury, for instance. I have found I need to alter my expectations. But I still have hope, because it is still possible to improve! For instance, I have started 2 low-level exercise classes, one in a pool, after a couple years of near-inactivity, and I definitely am hopeful, because in spite of the relatively minor flares after some classes, I am feeling better than I was before.
Anyway, I wish you hope and optimism, always!
Jean
Jean King
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Hi, I just saw your message. Sorry i haven’t been on here for a while been too tired. Thanks for the tip on emergency pack. I will certainly get one ready. 
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Ya I am the same. I know I have this chronic illness and I know I’m hurting and miserable practically all day. But it was so well is so hard to say that I have a disability. I’m so glad youare optimistic about your health I once was hopeful that I would get better but since my symptoms are progressively getting worse i no longer have that hope. But who knows maybe that will change.
Hi, thanks for sharing your story. I wanted to reply to let you know that I’m 36 and I’ve been dealing with increasing pain over the last 18 months and was working 45 hours a week. I was having a really hard time going to so many medical appointments and juggling everything plus of course the pain was out of control. My depression was also getting worse and worse.
Finally in May of this year I took a leave of absence and then in June I quit completely. I just started a minimum wage part time job where I work about 10-20 hours a week. So far it’s working for me but it was a hard thing to do to not work a full time job. I don’t have any in real life friends either, so it’s a hard thing to deal with. I totally get it.
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Mute,
Well you’re certainly not mute here! Thanks so much for responding to my post. I think it’s hard to develop or maintain friendships when one is in pain most of the time, and/or very fatigued, and/or depressed due to the chronic pain and fatigue or for whatever reason.
Ir sure sounds like you were working a lot, which I know when you are working full time or more it is so difficult to do other things. Do you have children or are you in a relationship? I hope you are getting some support around your depression and pain issues. Do you have a therapist? I have a psychiatrist, due to my chronic depression issues, and though I don’t feel he understands me completely, at least in talking to him I don’t feel so alone.
I hope you’re able to make ends meet with your part time job and I applaud you for taking some time off and finding a job that is more manageable.
Please share more about yourself! It was so nice to hear from you, it makes me feel like someone out there understands and empathizes, not to mention is experiencing a lot of the same issues. I hope you find some understanding and support from this forum. Please take good care, and I hope to hear from you again soon!
Just wanted to chime in here with absolute agreement that gluten should be avoided by anyone with FMS. And probably more disease states than that; but… just stating what I know to be true … for me a G-free diet may not have “cured” me, but I think my flares are shorter and those random, sunburn like pains are fewer.And on top of that, my belly is flatter, and I rarely get that uncomfortable bloated feeling after a meal. 
Girl, I’m right there with you with pain and depression and insomnia. I live in FL and when it gets cold here my whole body shuts down. I don’t really have any friends either. All my friends are married with kids and. Dry active. I think it’s easier for them to ignore me. If you ever need to talk let me k ow. U can tell you that exercise really helps me. And I have Norco for when I’m in real bad pain too. I’m allergic to lyrics and antidepressants. I take Vraylar. I also have PTSD. No fun. I’ve had fibro 20 years now. Drop a line when you get a chance or just need to. Hugs, Erin
Sheila,
Thanks so much for responding so kindly to my post(s)! I hope your holidays were good. I’m sorry to hear about your friend status (I’m in the same boat, as you know) and your PTSD, not to mention the fibro. PTSD must be awful. Yes, I figured out exercise helped, but right now I’m not exercising again. I blame it on the fatigue from the fibro as well as my depression. The depression and fatigue have become worse, starting just before the holidays. That makes sense since I miss my husband (who died about 1.5 years ago), etc. I’m sort of ok with it in a way, or at least I can tolerate it (depression and fatigue) better than before. Fortunately, my pain issues have improved, since I started low dose naltrexone and cbd oil capsules. Please let me know if you want to know more about either one, they have helped me a great deal with the pain issues. (Not so much with the fatigue & depression).
Thanks again for reaching out to me! Means a lot, especially during the holidays. Would like to hear more about you, if you are so inclined. And to offer my support if you need it for anything.
Happy New Year: I hope it brings you better health and greater happiness,
Jean
I am not really able to work either. I was just denied disability for the second time even though the government’s own psychiatrist said I am unable to work because I am unable to follow and carry out short instructions. I was a science teacher and craft store manager. Hard to do either job if you can’t remember what to do next.
I have tried to “work” by volunteering to see if I am ready to return to the work force but doing this causes me to flare. I can only volunteer a few hours a week. Not nearly enough for someone to consider hiring me.
I like to volunteer because if I am not feeling good I don’t feel guilty about calling off. Also it gives me a since of purpose and gets me out of the house.
Maybe you can find a charity that you are passionate about in your area. They , in general don’t care how much time you can give. An hour here and there is usually good.
I’m not able to work a regular full-time or part-time job, either. I started showing symptoms in Spring of 2009, when I was 20 (I just turned 30 a couple days ago); I’ve been sick for a decade, and things are getting progressively worse, not better. I was diagnosed with Fibromyalgia in December 2014, I also have PTSD, Depression, Anxiety, Insomnia, etc. The last couple of years I’ve been helping my husband (he’s a Lighting Designer and works in the San Francisco Bay Area theatre community), which has been nice, and is also pretty flexible. I also use cannabis and Norco for pain management, with some other topicals and a few other things here and there. I’ve gotten better at managing the pain, but my memory/cognitive skills aren’t what they used to be. Exercise helps a little, but not much, and most days I’m too exhausted to try it. (Currently dealing with a bad flareup) My pcp is pretty good, and is fairly familiar with fibro, thank God. My rheumatologist is also really nice. I hope you can find some relief; fibromyalgia is a nasty one, especially if you’re dealing with it alone…
For those of you who would like to try CBD: the most economical way to consume CBD is by vaping in a permanent, not disposable, vaporizer. I suggest going for one that costs around a hundred dollars. Don’t buy the cheaper ones because they contain some dubious plastics and metal alloys that can break down with heat and release poisons.
I use CBD successfully for both sleep and pain, and feel that it’s probably healthier than the pharmaceuticals I use, and which also help.
I’ve been using Cannabis (mainly CBD, but there’s a hybrid or two in there) as part of my pain management for over a year now; works great! I smoke via a vape, and it helps a lot. I also take CBD capsules, but they’re a tad more expensive than I’d like. Any recommendations for where I could get them in bulk for a decent price? I’ve heard the Apothecarium in San Francisco has good deals, but I haven’t checked it out yet. Any suggestions?
Thanks,
Rose
Hi All,
I use to be able to work full time and I had to stop due to my Fibromyalgia. It developed one day while I was working and all of a sudden I couldn’t move my arms, legs, and head without incredible pain. I have not taken CBD oil but I’ve heard nothing but positive things from people who have Fibro. My mother goes swimming at the YMCA (she has MS) and she talks to people there who have Fibro and there is a group of them that buy it in bulk and then each person takes a case of it and pays for their portion. I’m not really sure on the logistics. I may try it but we’ll see.
David
fibrogal,
I have had firomyalgia for over 30 years. My husband, deceased, and I owned an insurance agency in Florida. The medical doctors in Cape Coral, at that time, knew very little about FM. I went to a psychiatrist who, after 5 years of treatment, convinced me to apply for disability. I did and I stopped doing most of the business tasks, once it started. However, my husband was fighting a big battle with post-polio syndrome. I became his caretaker. We moved back to Illinois to be close to his grandchildren. My caretaking responsibilities became much more intense. The only saving grace was the Abilify that I was taking for Bi-polar II. It reduced and/or eliminated many of my symptoms. Right after my husband passed away, I had to stop this medication because of a side effect. I attempted to go back to work in a drug store, for about a year. I recently retired (quit). My FM , right now, is not in control. The opiod crises has the doctors running scared. I would go crazy altogether, if not for my dog and 2 cats. I strongly feel that rheumatology is the wrong medical discipline for this. I am working with my psychiatrist to get me back on my feet. It’s hard (and lonely) not to work. However, it created more problems for me.
I wish you luck with dealing with this medical problem. I guess we must just continue to paddle our boat, upstream.
I wish you well. You’ve had such a tough time.
Oh my you’ve been thru so much! My heart and gentle hugs go out to you. I am unable to work do to my FM.I was diagnosed when I was 23 and did my to try to work and take care of myself financially but physically and mentally I just couldn’t. So when I was 30 I had to resort to seeking disability benefits for myself. I too was alone, living in a new state in the middle of nowhere with limited resources & no neighbors or family, or friends etc so I can kinda understand your position. What kind of information were you seeking?
Hi my name is Elena, I’m 54. I worked as a dental/surgical assistant all together over 30years.
My last job of 17years let me go because of my illness (telling me I’m too slow and forgetful). I managed to deal with all the pain, severe fatigue and all the other crazy crap that comes with Fibro for many years.Got up at 4:00am to take my meds so around 5am I could get ready to go to work (Manhattan) it took me 2hrs. each way. It was a struggle every day!
Meanwhile after I was finally diagnosed in 2013 at age 46(for 26years I was going out of my mind trying to figure out what was wrong with me) going from one Dr. to another trying to find something that would make my life tolerable.
Now I’m 54 I moved to NC hoping that my life would be easier here.
So far it has been nothing but struggle.
Hi @elena1 ,
I’m so sorry to hear of your struggles. It can be pretty upsetting when you have to leave your job and go on disability. I think those of us that are disabled would give anything to work back again especially if we worked for a bit of time and had to stop. Fibromyalgia is such a tough tough disease. I know if I don’t move I will just get worse but that doesn’t make me force myself to move. If I went on even a short walk daily, it would help my fibro symptoms a great deal. It’s pretty amazing you pushed through all of the pain and stress. A 2 hour commute each way is just awful. Of course the sitting in the car makes you stiffen up so I can’t imagine how you would feel when you got to work or home. I commend you for doing it! NC sounds much better than Manhattan. Less stress and a warmer climate. I truly hope it gets better for you.
Davey
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